Developmental delays, splinter skills and crystal balls

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Can you imagine what it feels like to hear that your child has a developmental disability?

Here is my story:

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“Matthew was tested by a speech therapist, and a psychologist already,” said my husband Peter, “I don’t get why he needs to see a developmental pediatrician.”

“Because a developmental pediatrician will look at Matthew’s development from a medical perspective and make referrals to other specialists if needed,” I said, though I agreed that it was a little ridiculous to test him again so soon.

After testing Matthew, the developmental pediatrician started by giving us the most encouraging news of all. “Many areas of his delay are quite mild,” he said, “and Matthew has splinter skills, which are areas where he is at or above age level. With continued focus on speech and language, I’m optimistic about Matthew’s prognosis.”

Peter and I looked at each other and pumped our fists. Good news!

“This is wonderful!” I exclaimed.

“The fact that a significant delay exists is evident,” the doctor hedged.

Uh-oh.

He took out a pad of paper and a pen and sketched an arc.

“This arc represents a scale,” he said, making a small mark at the bottom of the scale. “This is where Matthew scores on the Stanford-Binet Intelligence Scale.”

I stared at the drawing, not comprehending what the doctor was trying to tell us.

“That looks low,” said Peter.

“He is in the second percentile,” the doctor replied.

“That’ll change once the language improves, right?” I asked.

“No, this is an actual measure of Matthew’s cognitive ability,” he said, still pointing at the two-percentile mark with his fancy pen.

“But you said we should be optimistic. You said he had splinter skills. And he is now seeing a psychologist twice a week for play therapy. Don’t you think that maybe it all just hasn’t clicked yet?”

“I don’t have a crystal ball,” he said, “but Matthew is in an optimal spot at the moment. It would also be in his best interest for you to consult your local school district about placement in special-education classes. You should also contact the Regional Center of the East Bay. They provide services for children with developmental disabilities and their families.”

“Wait a minute,” I started, but Peter held up his hand to silence me.

“Just so we’re clear,” he said. “You say that Matthew has made substantial growth in all areas. But when I look at this scale, it looks like he’s retarded.”

“Don’t use that word, I hate that word,” I broke in, “besides, that last person that evaluated him said he wasn’t retarded. He just doesn’t test well. We found a child psychologist who is going to draw him out—”

“Lau-ra,”Peter said, trying to calm me.

“OK,” I said, jumping up, “we’ll talk to the school district and the regional. . . whatever, but you know what? I’m kind of upset. We can talk more about this another time.”

Peter and the doctor sat frozen in their chairs. They looked afraid of me.

I gathered up my purse and my blank notepad and rushed out. Peter followed me to the car, where I was pacing angrily.

“Let’s walk around the block,” I said, shaking. “I’ve got to move.”

Peter tried to take my hand, but I refused it.

“I know, Laura, this is a big blow.”

“No, it’s not! He’s got it wrong! The problem is that all these people have such different ideas about what’s going on with Matthew and it’s making me insane! First, it wasn’t autism or retardation, then I get used to the idea that it might be autism, but good news! Dr. Hoffman thinks he can draw him out of it.And now this guy puts him way low on his fancy intelligence scale” I started to laugh, a crazy, stress-driven laugh headed toward hysterical tears.

“I know, Laura,” said Peter. “It’s so bad, it’s almost funny.”

“And one last thing,” I said once I had pulled myself together. “I will hurt the next one of them that uses that ‘crystal ball’ line.”

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What’s your story?

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It is never easy to get a diagnosis, but the good news is that the earlier get one, the better the outcome for your child. CLICK HERE to learn more.